For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

Saturday, June 28, 2008

"Give yourself to loveIf love is what you're after.Open up your hearts toThe tears and laughter.Give yourself to love,Give yourself to love."--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

A caregiver said something very profound to me one day which I decided to tape to my wall. She said that as a young woman in her forties she couldn't stand the Buddhist philosophy of acceptance of what is. She always was a crusader for social change and "making things right." But now that she's 84 years old, as her body is failing her and her short term memory is leaving, she clings to the following Buddhist philosophy as a lifeline. Her words:

That it is possible and ultimately desirable to accept life's limitations while enjoying the mental and emotional freedom that comes from noticing the beauty inherent in every present moment. That no matter how bad things get there is always something in the present moment that makes life worth living and that it is my task to learn to spend more time noticing those things than I do lamenting the losses of the past and the worries of the future.

Today, as I sit writing this, I have the windows of my house closed up tight to keep the smoke in the air from billowing in. There's a huge fire burning across the bay in Big Sur and the wind is blowing the smoke directly this way. The heavy Santa Cruz fog keeps the smoke trapped in the air. We haven't seen the sun in two days.

Two friends were evacuated and narrowly missed losing their homes in a fire just a few miles away and now business associates are in danger of losing almost everything (home and livelihood) in Big Sur. The fires are literally just across the street from their homes. When I think about the challenges friends have been facing lately I have to be thankful for what I have in my life right now.

It frequently takes a crisis to remember what matters most. My Buddhist caregiver friend reminded me to take time to do that every day.

Monday, June 16, 2008

Paul's mom sent us a nice article about aromatherapy that she clipped from Prevention Magazine. In it was reported that a study with college students at the University of Northumbria showed a significant increase in memory and feelings of alertness for those who used rosemary essential oil as compared to a control group. Oddly, the Prevention Magazine article did not report that the study also showed that rosemary slowed memory recall for the same test subjects. In other words, the students outperformed other students in two different kinds of memory tests (and felt more awake doing it) but took a little longer to come up with the results. Hmmm. Could it be that if we stay awake and slow down our brains function better?

Thursday, June 12, 2008

I just finished reading My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor and I highly recommend it to everyone. Jill Taylor was a neuroanatomist who had a severe stroke on the left side of her brain and managed to recover completely. It took 8 years of step by step progress in which she needed to relearn everything most of us take for granted. How to talk and understand language, how to walk, how to dress and feed herself. And now she has gone back to teaching brain anatomy on the college level, and promotes brain research across the country.

Her book is fascinating because she tells the story of what it was like to have a stroke and what it was like to recover from it from the perspective of not only someone who experienced it but as a scientist who was fascinated with the process and delights in sharing it. Not only that, her book offers very interesting insights into the functions of the right and left hemispheres of the brain, especially in terms of processing experience. She's waxes very eloquent about how living in the right brain is very much identical to what people experience in high states of mystical experience.

It's a great book, easy to read and understand. It could be invaluable to anybody taking care of a loved one with stroke but I recommend to everybody.

Sunday, June 8, 2008

David Solie, author of How to Say It to Seniors: Closing the Communication Gap with Our Elders, has a wonderful article on his blog on this topic. In it, he helps his readers close the gap between our generation's desire to keep our parents safe and well-cared for and their intense insistence on staying at home as long as possible. "How can they be so unreasonable?" we think. "Can't they see that I can't do it all for them anymore--I have a job, a husband and kids of my own. Dad keeps falling down, he's losing his eyesight. Mom gets lost on the way to the grocery store. But they fight me tooth and nail every step of the way!"

According to Solie, all is as it should be. And now that I have a fresh perspective on the problem I'd have to agree. Our parents are very much aware that they are in their final days, step by step losing everything they once held dear. For them having even one more day with the people they love, one more day in the home they created and care so much about, one more day means so very much.

You have a choice about the role you play in this progression. Silently, holding their hands, and doing everything possible to help them hold on to those minutes and days as long as possible without any limits and boundaries on your part is one. Many people come to me with this as their expectation. But there are limits and boundaries -- physical ones, financial ones. Eventually something -- or someone-- gives out. Or you can do the same thing but hold on to a reasonable expectation about what's happening and what can be done. "I'm here for you mom, I'm here for you dad but when we get to the point of xyz (set your limit and boundary here) we're going to have to try something else. Can we put a plan in place for that together?"

They may refuse that, too. "I lived in this house my whole life and I'm going to die here!" Your parents are accepting that this process is going to end in death. Under the circumstances their "safety" and "comfort" isn't necessarily their highest concern. It's about cherishing what they do have left a little bit longer. You'll do better if you can accept this, too. At least to some extent. Deal with your feelings about their impending death. Don't fight the reaper—work with it instead, choosing to make this time a loving end of life experience as much as possible.

Or you can fight with them, missing the point of why we're here together on this planet and why you're doing so much for them in the first place: you love each other. Keep that thought foremost in your minds and whatever has to be done will happen.

Wednesday, June 4, 2008

The decision to place a loved one in a nursing home is always tough. We feel horrified by the options available to us. We feel guilty. We worry that the move will send our loved one into a tailspin. But when caring for a loved one at home requires more emotional and physical resources than you have available using a skilled nursing facility is sometimes the best decision. Consider the cost to everyone involved.

I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. She had lost all her friends because she was never available to see them. She was unable to sleep because her mother would call for help several times a night, and she was losing her hair from worry and stress. There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. Her doctor insisted that her mom be placed immediately.

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

The most loving option is to do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support the placed person needs to weather such a difficult transition in the best way possible. This shift in role begins the moment you start to prepare for making the move.

Preparing for Making the Move

Step 1. Prove the Need. What are the costs involved in keeping the patient at home? Is the patient’s safety at risk? Is a single caregiver being expected to meet all the patient’s needs at the risk of their own health and well-being? Are there community services or paid services available that are adequate to keep the patient at home?

Step 2. Involve the Family. The whole family needs to be in agreement about this decision as much as possible. Family meetings are hard to arrange when people live out of town or have busy schedules. It can be emotionally difficult to face the fears and guilt and sadness such a choice entails. But for the good of family relations an effort to communicate via telephone or email must be made. Let everyone express their feelings without attack. Decide as a group to put each person’s needs ahead of other people’s desires and make choices based on what’s best for all concerned. Ideally, the patient should be involved in this meeting but when dementia is fairly progressed that is not always the most prudent path. Also, if family members have differences of opinion which cannot be easily resolved it can be very helpful to do this kind of preplanning with an objective third party acting as facilitator.

Step 3. Talk to the Patient. This has got to be one of the hardest things to do. The ideal situation is to approach the patient with honesty and a clear explanation of the reasons why the family wants them to consider this option. If the patient has enough savvy to be able to make rational choices about their future include them in the decision-making process from the start. You may find that with enough advance preparation they may actually feel relieved that their needs and the needs of their family are being well thought about.

Sometimes, though, the demented relative completely forgets that any discussion took place or is too volatile to be included in the first place. In any case, the patient is likely to need (or demand) a chance to express their full feelings. Responses like “How could you do this to me?” or “I’d rather die than go to a nursing home” are expressions of fear and grief. It can be hard to be treated with such reproach but consider what you might need if you were in their shoes and reach for the most loving approach you can. Acknowledge the pain they are feeling as best you can, but resist letting yourself be guilt-tripped into making a choice that is simply not sustainable. Allowing your patient’s fear to run the show is not, in the long run, healthy for either one of you. Stay firm. Stay loving. Get help with the feelings that come up by talking to a counselor, a supportive family member or friend.

Step 4. Begin Your Search. Now it’s time to visit homes if you haven’t already. Get on waiting lists. Talk to your financial and legal advisors. Talk to your local senior service agencies to find out what kinds of complaints have been registered (if any) about the homes you are interested in. Take your time. Plan ahead if possible so you don’t have to make a swift decision from a limited number of choices. And keep in mind that in many parts of the country there is a shortage of space in local homes and waiting lists are the norm. The wait for MediCal or Medicare-paid beds can be even longer. You may need to expand your search for facilities to another county or even further away. The commute may be inconvenient, but the quality and price of the facility might be worth the ride. Be flexible. Be brave. Let go of finding the perfect situation and you’ll get what you need.